spit up.

Spit Up by Lynette Polinder

I drift to sleep each night with you on my mind

and wake up only to find you there again.

I've been sleeping with your cow and blanket.

Both still smell of you.

Each day your scent grows more faint

and I hate the thought of losing it.

We placed your onesie in a sealed bag

to keep your smell as long as we can.
It's only been a week since you left
and your scent is already fading.

People have told me that time will help ease the pain

but I fear it will also dull the memories I have of you

your smell

even the sound of your little cry.

I've been watching videos of you

looking at photos

and burying my face in your blankets.

It's the closest I can get to you

but the computer screen is far from your soft skin
and can't replace your warm body.

The past four months feel like a strange dream

but when I wake up I can still smell the spit up on your blanket.

a sweet gift.

This sweet hat with olives on it and booties arrived in the mail on Monday morning. They were made by a friend from Lynden, WA. I know this might be strange since Olive never got to wear them, but I found them to be so cute that I wanted to share them with you guys.

My letter to Olive.

Hi Sugies...it’s your mama,

I woke up the last two mornings with a deep hole in my heart. This isn’t how it was supposed to be. You came so early—too early, and if there was anything I could do to go back in time and change your early arrival I would do it in a heart beat.

You were my first little love, my firstborn, and no one will ever replace you. Oh Olive…the place you brought me…the people you’ve caused me to cross paths with, and the things you taught me in your short little life are greater than I every imagined possible.

You fought against everything that came against you, and your feisty spirit took us all by surprise. I miss you…and I’m going to continue to miss you for the rest of my life. I miss your big bright eyes and your sweet little button nose. I will miss kissing the  folds in your neck, your expressions, and your little goat-like cry.

Since meeting you I’ve fallen more in love with your dad. He is so proud of you and loved you the best he could. I loved hearing him make up songs for you every morning and the way he would be able to calm you down when the rest of couldn’t.

Olive Hope, you are one of my heroes. You fought harder than any baby should have to fight.

I still have so many unanswered questions with why God never chose to heal you here on earth and make your broken places whole.  It certainly wasn’t because people weren’t asking him with sincere hearts. I keep telling Jesus that He has a lot of explaining to do someday. But for today I’m going to thank Him for each day we’ve spent with you. You were a gift to us and tonight I can rest knowing you are no longer in pain.

There will be no more IV’s, ng tubes, no more shunt surgeries, infection, blood draws, apnea, and struggle. You have a new body now, a new brain, new lungs—but I’m certain you still have that feisty little spirit.

I can’t wait to see you again when I get to Heaven. I’m not sure how it will all work, but I hope I will get to raise you there. Until then I’m afraid I will just keep living with this hole in my heart.

I love you,

Your Mama

Video for Olive's Memorial Service

This was the video I made for Olive's memorial service. The first song, "Sweet Sweet Baby" by Michelle Featherstone was one that I sang to Olive often in the last four months. The last song, "Come to Jesus" by Chris Rice was the song playing when Olive took her last breath. Olive passed on Rusty's chest at the same time the words in the song sang, "and with the final heart beat..."


Click here for the link on youtube.

our address.

Some of you have been asking about our current mailing address where you can send notes and thoughts...

Rusty & Lynette Polinder
516 S. Main Street
Middlebury, IN 46540

we have been overwhelmed by the kindness of so many of you.

in lieu of flowers

So many of you have already graciously been asking where you can send flowers . . .
Rusty and Lynette would love to do something in honor of Olive Hope, so that her life can bless the Akha children in the villages in Northern Thailand.  So, in lieu of flowers, please send any donations to:
Siloam Fellowship 61616 C.R. 35 Goshen, IN 46528
Please reference Olive Memorial Fund in the memo.

If you'd like to see more about the work they have been doing in Thailand with the Akha Youth Development Fund please see: http://web.mac.com/rustylynette/AYDC/Welcome.html

Memorial Service

A viewing will be held from 1:30-5:00 pm on Sunday afternoon at Siloam Fellowship located at: 61616 C.R. 35, Goshen, IN 46528 (at the corner of St Rd 4 and CR 35).


On Sunday evening at 6:30 pm we will hold a memorial service in honor of little miss Olive Hope. This will also be held at Siloam Fellowship.


Monday morning we will meet at Miller Funeral Home in Middlebury at 10:00 am and burial will be at 11:00 am at the Miller cemetery.


Thank-you for your prayers and love. Our hearts are broken.

Olive went home to be with Jesus today.

Olive Hope went home to be with Jesus tonight at 6:37. The infection was too strong for her little body. She was surrounded by lots of love as she went. She left us on her daddy's chest.

Infection?

This morning after coming to see Olive my heart dropped. She is having all the signs of infection that the neurosurgeon warned us about...fever, redness and swelling along the shunt line, tense fontanel, irritability, spitting up.

The neurosurgeon is on his way to look at her, but I think this may mean we will be transferring to Riley Children's Hospital in Indianapolis to have the shunt removed. Maybe I'm talking too soon, but at this point I'm not sure how things could go another way.

Please be praying.

Little Miss O

First of all I just want to thank each of you who have been writing us thoughtful e-mails and letters. We have been so thankful for them and wanting to write back, but having a hard time finding the time these days. Please be patient for some delayed responses over the next few months and know that our silence is no indicator of how much it has meant to us.

Well, little miss Olive is sound asleep after another eventful day. Her suture from the shunt has continued to leak out cerebral spinal fluid. This is causing a concern for infection---if fluid can leak out, bacteria can creep in. If infection creeps in and causes meningitis this would mean the shunt will need to be removed and more surgery of putting a new shunt in. So, all this to say, please continue praying against any kind of infection.

Tonight the neurosurgeon came and put more stitches in her suture, hoping this will help the leakage issue. Right now her shunt is working a little too well and shunting too much fluid out of her head. The problem is they can't increase the pressure of the shunt until her suture line heals shut. Please pray for those skin cells to continue weaving together and healing.

Rusty is flying back to Thailand on Sunday to meet with some businessmen interested in marketing the tea and coffee that Thai-Akha Ministries Foundation (the foundation we work with…http://t-amf.org) has been growing. This has been one of his main goals—to find ways to help the foundation become self supported, and this meeting was planned about a year ago.

We also still have many unclosed ends that need to be taken care of there and this will give him a chance to do that.  Though our future is unknown with Olive and the possibilities to return to Thailand, we are still able to continue some of our responsibilities while living here in the States. Rusty will be gone for about 2.5 weeks, and even though the timing isn’t ideal we both agree on the importance of him going. Please pray for us as we are apart and for all the changes of being discharged home during that time. At this point discharge is tentatively planned for next week, but we will see how things go with little miss O.

Olive's mounting medical costs.

One of our big stresses lately is figuring how to get Olive's medical care covered since being back in the States. Olive is in a very vulnerable place, as many American's are when their insurance caps off their care. Political views aside, it seems America's system leaves a lot of people in a helpless position. We have been feeling helpless in the process of applying for Medicaid. 

I (Rusty) have been working on this continuously for the last three weeks, getting nowhere because our income is above the poverty level with the extra gifts given to cover Olive's care while in Thailand and for the medical evacuation. We have been told that the application process will take several months and even then it doesn't look like our chances are good. The stresses have been building as we've been wondering if this will ruin us financially... bankruptcy? How we will pay for future doctors appointments? Home care? Possible future surgeries? We aren’t asking for any free hand-out, just something we can afford.

To make a long story shorter, today a miracle happened. I was able to meet and talk directly with someone in the Medicaid office and walked out 20 minutes later with an official Medicaid number for Olive. 

This is truly amazing and we are so thankful for this answer to prayer. At the same time we can't help but think of all of the Americans still left in our old shoes. This seems to be a big topic in politics lately. Whether Republican or Democrat, no matter which side you claim, I hope we can all agree that there are issues with our current system that need to change. Let's remember that this is about people, not just politics. Though I don't fully agree with Obama's health care reform, it seems that something needs to change. Hopefully both sides can come together to create change where it is needed. This year I think we will feel a little less bitter paying our taxes, especially when the government is helping us in a time when we were stuck between a rock and a hard place.

not going home quite yet...

We were planning on being discharged tomorrow (Wednesday) but Olive had some leaking CSF fluid from her suture area tonight and has continued to have some bouts of her heart rate dropping and oxygen saturation that have been concerning us. Today was filled with discharge teaching on how to use at home oxygen tanks, suction machine, pump for over-night feedings, and an apnea monitor. We also had CPR training and lots of training for inserting her ng tube for feedings.

I will try to update more tomorrow, but now i need to get some much needed rest for another big day. Thank-you for your continued prayers, love, and support. It means more than you realize. One day we will have a long list of thank-yous to write, but until then this short message will have to suffice.

love,

Lynette

A day of good news.

Olive had a good day today, much more alert and getting back to herself. Today the nurses were able to wean her off of oxygen, and tonight we found out that her CSF fluid is clear of any signs of infection--which was very good news. At this point our doctor is hoping to avoid surgery for reflux and will be trying other things to manage it, and discharge is tentatively planned for about a week from today. Today the neurosurgeon and opthamologist came to see her and both were happy with how things were going. Also, after being weighed tonight she has finally reached 6 lbs...quite the feat when starting out at 2.8 lbs.

We had so many lovely visitors today. : >)

Some of our dear friends and relatives came for a visit last weekend and Sarah knitted this little hat for Olive (which i loved). Olive loves the hat too, but I think she was just getting ready to sneeze before I took this photo.

My older sister Melody is past her due date, so we are getting excited to meet Olive's new cousin who will hopefully be arriving before too much longer! Tomorrow my mom will head to Kansas to be with her to help out.

Love from the grandparents

Surgery #2 completed.

Surgery went well. Since surgery at 12:00 p.m., Olive has been sedated with morphine and on the ventilator. She will also be NPO (unable to eat) until tomorrow when she will also possibly come off the ventilator. One concern is that she hasn't urinated since the surgery, but they are saying this can be a side effect of coming off of general anesthesia and are monitoring this closely.

One really lovely part of this day was that the nurse was able to get an IV in Olive this morning on her first try...it's been months since that has happened.

During surgery they took a sample of CSF (cerebral spinal fluid) fluid and sent it to a lab to look for any signs of infection. If she were to have an infection everything will have to be removed (including the broken part of the shunt that is currently left inside her brain). We would have to move to Riley's Children's Hospital in Indianapolis if this ends up being the case.  Please pray against any infection.

We are realizing that if we focus on the what ifs...and all the unknowns of the future we will drive ourselves mad. Trying not to worry about tomorrow because it will have enough worries of its own.

One step at a time...one day at a time...or lately its been more like one hour at a time.

Here are some pre-surgery photos from this morning...

and one post-op photo from tonight...

A broken shunt.

This morning after Olive had her CT scan the neurosurgeon was able to see that her shunt has broken apart. They aren't exactly sure why this happened, except that it is a mechanical problem. It has three pieces...the valve behind her ear, one tube attached to the valve that goes into the ventricle in her brain, and one tube from the valve that goes all the way down to her abdomen. The tube that has detached is the one going into the ventricle in her brain.

Tomorrow (we aren't sure yet what time) she will be put on general anesthesia once again, back on a ventilator, and they will go in and fix the broken parts. This is not a common problem for shunts, but one of the complications that can take place. The neurosurgeon seemed pretty disappointed and told us that this hasn't happened for him in years.

I think the doctors may have been surprised by my apathetic response when they told me the bad news, but these days it is starting to feel like if there is a risk of something going wrong, then most likely it will.

One of the challenges with this will be keeping an IV in her for the next three days to give her antibiotics to prevent infection. Infection is another complication with this surgery, in which case they would have to remove all of the peices and start over once again if that happens.

Surgery for her reflux problem is still being considered, but not confirmed yet if we will need to do it. Being discharged this week is obviously not going to be happening after-all, which feels more comforting than anything based on the circumstances.

We are feeling pretty weary. Wondering if our prayers are going anywhere these days... wondering what Jesus is trying to teach us through this foggy time where the future is so unclear. Despite the circumstances we are still grateful to be here. The nurses have been so sensitive and kind throughout all of these recent roller-coasters. It's been a huge blessing to be under the care of a doctor who shares in our same faith and who cares deeply about Olive.

We still have each other, we still have Olive, a warm comfortable bed to sleep in, food on the table, and so many friends and family and strangers holding us up. We still have much to be grateful for, and I hope I never forget that--even when our questions continue to go unanswered.

Dear Refuge of My Weary Soul

Sandra McCracken sings this hymn, and it has been on my mind all day.

Dear Refuge of My Weary Soul

1. Dear refuge of my weary soul,
On Thee, when sorrows rise
On Thee, when waves of trouble roll,
My fainting hope relies
To Thee I tell each rising grief,
For Thou alone canst heal
Thy Word can bring a sweet relief,
For every pain I feel

2. But oh! When gloomy doubts prevail,
I fear to call Thee mine
The springs of comfort seem to fail,
And all my hopes decline
Yet gracious God, where shall I flee?
Thou art my only trust
And still my soul would cleave to Thee
Though prostrate in the dust

3. Hast Thou not bid me seek Thy face,
And shall I seek in vain?
And can the ear of sovereign grace,
Be deaf when I complain?
No still the ear of sovereign grace,
Attends the mourner's prayer
Oh may I ever find access,
To breathe my sorrows there

4. Thy mercy seat is open still,
Here let my soul retreat
With humble hope attend Thy will,
And wait beneath Thy feet,
Thy mercy seat is open still,
Here let my soul retreat
With humble hope attend Thy will,
And wait beneath Thy feet

Surrounded by so many of you...

In the last 48 hours we have seen Olive go from sleeping solidly to being very alert and active. This in itself has been very encouraging news.

In other news we are seeing another problem developing with reflux after her feedings. She has been throwing up after most of her feedings while arching her back and crying inconsolably. We have been told this is a common problem for premies and even more common in infants with neurological problems. One of the ways you can prevent reflux after feedings is to elevate her head. However, we aren't able to do this with the leakage around her shunt. The longer her head is elevated the more swelling we see around her shunt tubing.

Dr. White is suggesting to try less invasive methods to treat reflux in the next few days (smaller and more frequent feedings, medication...etc), but said if these things are ineffective then she will most likely need to undergo surgery next week to solve this problem. Poor little peanut...her issues just don't seem to end.

Tonight I had dinner with my dad while mom stayed in the NICU holding Olive.  We went to Chili's and spent a good amount of our meal crying together talking through life the last few months, and the journey ahead. I was reminded of how grateful I am to be here surrounded by family and friends. A few months ago Rusty's childhood pastor (Ken Koeman) wrote and e-mail to us and these words from it resonate so well with life these days...

"And, in the meantime, we pray that those threads by which you are just barely hanging on, will become strings, then ropes, then cables.  We are so grateful for those who are gathered around you.  Remember that they are Jesus to you.  He is there, in them.  That is how real his presence is, in your fiery furnace." 

unexpected laser treatment.

This morning after arriving in the NICU we were asked to sign consent for Olive to undergo round two of laser eye treatment. The opthamologist came two days ago to assess Olive and noticed that while one of her eyes had been treated very effectively in Thailand, the other looked like only half of it had been treated. Since then, the doctor here has been in communication with the doctor who performed her treatment in Bangkok. The ophthalmologist in Bangkok told him that they weren't able to finish treating one eye because the power went out...what????? A small detail he failed to mention to us.

This afternoon she had laser treatment and everything went well. She hasn't woken up all day because of being drowsy from the sedation medication they gave her prior to the treatment.

This evening I went to hold her try a little kangaroo care and while holding her she stopped breathing. Usually she can come out of her apnea spells on her own, but this time she didn't and the nurse had to bag her. I learned later that this had also happened earlier in the evening. I'm not sure what is going on with her. The doctors aren't exactly sure either except that it seems to be caused by neurological problems.

Olive also been having some complications with her shunt. After arriving from Thailand the CT scan showed that she had fluid on top of her brain that most likely occurred when too much fluid was released at once during a previous tapping in Bangkok. The neurosurgeon set her shunt so that she would have increased pressure in her head to help that fluid on top of the brain move back into the ventricles. The fluid has since moved back in the ventricles but now it is leaking out around the shunt all the way to the peritoneum. We have been told this isn't a massive problem, but one that just needs to be monitored.

I'm going to bed tonight feeling pretty worried about her little head. I know she is under the care of excellent medical professionals, but I also realize that there is only so much they can do. Each day it seems we get more of a reality check learning about different problems she has and how this will affect her future. These informative meetings force me out of that safe place of denial I often like to rest in, but if I sit in the reality of it all for too long I get overwhelmingly sad.

I'm feeling so sorry for her little body and how much she has been through. These new episodes of apnea and dropping her heart rate continue to worry me. Wishing there is something I could do to make her life easier.

Lots of people have been reminding me that one day we will look back and understand clearer why things happened this way...I really hope so. I keep telling Jesus that someday He will have a lot of explaining to do to me to help me understand all of this.

update.

Over the last day and a half Olive has started to act a little more like herself. She is still having some of those episodes of apnea and bradycardia, but not nearly as often. The doctor is not sure if her episodes are due to them trying to wean her off of seizure medication (which have since been increased), or if they are the beginning symptoms of cerebral palsy. We were told that prior to these episodes Olive had a 90% chance of developing cerebral palsy, but now they would even assume a 99% chance.

As far as her head, today her head circumference grew a bit, and her fontanel was tense. Tomorrow morning she will undergo another CT scan to assess the fluid in her head. After the scan the neurosurgeon will know if everything is ok with the shunt, or if there are any complications.  If things are ok, he will then most likely reset the settings on the shunt with a magnet to have it release more fluid than it is currently releasing.

We are still recovering from jet lag and waking up at 4:00 am having conversations, but each day we are feeling more like ourselves. This week will be filled with meetings with social workers, physical therapists, occupational therapists and a nurse who teaches massage therapy for infants.

Olive has been having trouble feeding since arriving here. She has either been drowsy, exhausted, or irritable and hasn't done well bottle feeding.

We have been thankful for so many friends and family who have been supporting is in so many ways since coming home. It's been hard not to feel concerned when Olive hasn't yet returned to her pre-surgery little self, but we are hoping within a few days things will continue to improve.

thank-you for all of you who have been thinking of us and praying for Olive.

Much love,

Lynette

Not doing so well.

This morning Olive was taken off the ventilator and was doing o.k. until this afternoon when she started having seizures that were causing her heart rate and oxygen saturation to drop. Her seizure medicine has been increased since then so we are hoping this will help. She hasn't been back to herself yet. Still having pretty weak quiet cries and not fully alert.

Going to bed worrying about what may be causing these seizures since she hasn't had any since being in Chiang Rai, but also thankful to have her in his place where the care is excellent.

Please continue praying for her recovery.